How did your fibromyalgia journey begin?

It started when I was sixteen, but I was only diagnosed at 27, quite by accident.

When were you diagnosed, and what was your journey to getting a diagnosis like?

I’ve seen several doctors over the years, most unwilling to listen to me. When I was 27, I accompanied my sibling to her doctor. The doctor did a diagnosis of exclusion for my sibling – their answer was “no” to most questions, but I answered “yes” to everything. She had me hop onto her table and tried some trigger points. She then asked if I knew what Fibromyalgia was. That was the official start of my journey.

Do you have any idea what may have contributed to or triggered the onset of your fibromyalgia?

Childhood trauma due to family (not my parents)

Do you experience fibromyalgia alongside any other health conditions? If so, how do these experiences affect one another?

Yes. I also have IBS, migraines, hypermobility, gluten intolerance, Raynaud’s disease, and I’m currently undergoing testing for POTS and MCAS. All these issues feel like they are interconnected and some conditions, such as the arthritis makes the fibro pain worse.

How does fibromyalgia show up in your body and daily life? What symptoms do you experience?

Energy levels

Hypersomnia

Insomnia

Roving body pain

Low energy levels

Brain fog

Headaches

How would you describe the pain and physical sensations you experience with fibromyalgia?

Stabbing, burning, dull, also formication – the feeling of bugs crawling over or under your skin, as well as itching

How would you describe the fatigue you experience with fibromyalgia, and what impact does it have on your life?

My fatigue tends to override everything, and I almost always feel tired.

Do you experience brain fog or difficulties with memory, concentration, or finding words? If so, what is that like?

Yes. It sometimes feel like I forget words/things/details/events. It’s like I know the thing I’m trying to remember is there, but just out of reach. I’ve had severe problems in the past with getting dates and details wrong.

Do you experience any sensitivities, such as to temperature, touch, light, noise, smell, or other things? If so, what is that like for you?

Yes, it feels like my internal thermostat is broken – I’m extremely sensitive to heat, and to severe cold. I also tend to feel like I have sensory overload in busy or loud spaces.

I have a light sensitivity that makes it difficult for me to drive at night.

It’s super frustrating

How has fibromyalgia affected your sleep and ability to rest?

Yes, I have both insomnia and hypersomnia

What is a fibromyalgia flare like for you, and how is it different from your usual experience?

Severe brain fog, body pain, headaches, and general worsening of my symptoms

Do you have “good days,” and if so, what do they look like?

Yes. These days I feel almost normal – low pain and high energy.

Have you noticed anything that seems to trigger or worsen your fibromyalgia symptoms?

Pushing myself too hard.

Doing too much on good days.

Some chemical smells.

Stress/anxiety

How has fibromyalgia affected your daily life, including your education, work, routines, plans, or the activities you are able to do?

I work for myself, because I can’t work full-time at all. I have fibro/arthritis pain in my coccyx, which means I have to either stand/lay down. My brainfog also makes traditional work difficult.

Has fibromyalgia had an impact on your finances or access to care?

Yes. Because I can’t work full-time, I don’t have a stable income. South African medical aids doesn’t recognise Fibromyalgia as a diagnosis, and I normally get a year or more exclusion for my symptoms. This means that to get onto a medical aid, I have to pay for a year of medical aid I can’t use while still paying for all of my medication. This causes severe financial stress.

What has your experience been like with doctors, specialists, and the healthcare system?

Uninformed! They try to make it off as anxiety, stress, or even tell you that it’s all in your head. It took me over a decade to find a doctor that took me seriously.

This has made me passionate about patient advocacy.

What has your experience been with treatments, medications, therapies, lifestyle changes, or other approaches to managing fibromyalgia?

Medication helps, to an extent. I have tachycardia, which makes going to the gym difficult. Most therapies and additional treatment is prohibitively expensive keeping in mind that I don’t have a full time income.

What has it been like to live with a condition that others can’t see or may not fully understand?

Frustrating and isolating

Have there been times when you felt dismissed, misunderstood, or not believed about what you were going through?

Several times, especially with close family and doctors

How has fibromyalgia affected your family relationships, friendships, or dating life? Do you feel supported and understood by the people closest to you?

Yes. Family conflicts, especially because the illness is invisible.

I often need to cancel things on short notice. As for dating, I simply can’t do things that includes physical activities such as hiking.

Has fibromyalgia had an impact on intimacy or your sexual life?

Yes, low energy, easily out of breath, high heart rate, low libido

What has the emotional or mental side of living with fibromyalgia been like for you?

Depression and anxiety as a result of the pain and brain fog.

How has fibromyalgia affected your relationship with your body, identity, or sense of self over time?

Yes

Beyond treatment, have you found anything that genuinely helps you cope physically or emotionally?

Giving back to the chronic illness community

Have you connected with others who have fibromyalgia, either online or in person? What has that experience been like?

Yes. It’s an underserved community where I live, and many are ignorant about the issues. But generally it really helps to connect with other people who understands what I’m going through.

How do you feel fibromyalgia is understood by the medical community, society, and the media? What do you think needs to change?

Largely misunderstood and dismissed

What would you like more people to understand about fibromyalgia?

That just because it’s “invisible”, it doesn’t mean that it’s not real

How has your relationship with fibromyalgia changed over time?

While I now understand my body better, it is still frustrating, especially since I’m currently being diagnosed with more chronic illnesses. This makes depression something I have to manage carefully

Despite the challenges, have there been any unexpected changes, insights, or personal growth that have come from living with fibromyalgia?

Yes, I have built a local chronic illness community to help others with their journey

When you think about the future, what fears, concerns, or hopes do you have?

Progression of my symptoms